We are happy to announce our partnership with the University of Pennsylvania’s Orphan Disease Center JumpStart Program! As part of their Genetic Counseling Student Exchange program we will have a student intern starting in February to work on a four month project with the foundation.
The project will help support the PURA Foundation in its outreach to hospitals, research centers and any other institutions that may be working on rare diseases with the following goals:
- Increase awareness of PURA Syndrome and the PURA Syndrome Foundation
- Increase awareness of and participation in the PURA Syndrome Global Patient Registry
- Grow the PURA Syndrome Clinician Network
- Increase diagnoses of PURA Syndrome and connect families with the PURA Syndrome Community
We are excited to have this opportunity to increase awareness of PURA Syndrome and have the opportunity to engage student interns at the University of Pennsylvania!